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First RPFB Families Conference proves great success

09 May 2017

RP Fighting Blindness recently held its first ever Families Conference in Milton Keynes, for families affected by inherited progressive sight loss. This free event saw 150 people attend from across the UK for a three day programme of speaker presentations, interactive workshops, fun activities and Q&A sessions. The Families Conference was developed as a fully-inclusive event to provide families affected by inherited retinal dystrophies the opportunity to meet and socialise in an informal setting, and to learn more about the services and support available to them.

Charities including Guide Dogs, Sense and RNIB ran workshop sessions, and speakers included eminent researchers such as Prof Graeme Black, Director of the Manchester Centre for Genomic Medicine, and Prof Andrew Webster Consultant Ophthalmologist at UCL. Other medical experts included Dr Mariya Moosajee, Consultant Ophthalmologist at Moorfields Child specialists, Rob Henderson, Paediatric Retinal Specialist, Bo Anderson, Child Educational Psychologist and Laura Ross, Children’s and Genetic Eye Clinic Liaison Officer. RPFB trustees Rachael Stevens and Lucy Withington were in attendance, and many staff from head office came and helped run the event, giving delegates a chance to meet some of our team.

Older children taking part in the weekend had the chance to go on an outdoor activities day at Caldecott Xperience, consisting of sailing, archery, zorbing and canoeing. MK Dons Inclusion Team also ran activity sessions, with football training, multi-sports and a beat the goalie competition. We wanted to encourage an open and positive atmosphere for the children, some of whom knew few or no other children with an IRD. We saw many friendships develop over the course of the weekend, and are delighted that both child and adult delegates had fun and made new connections with peers.

Bhavini Makwana, RPFB Ambassador and a Families Conference delegate who attended with her husband and two daughters, commented “What a fantastic RP Fighting Blindness Families Conference, which proved to be a huge success; lots of information shared, advice gained, well organised and connecting with people all going through the same fears, dilemmas, concerns and giving each other hope.”

“We’re truly delighted that our delegates had such a great time, and that the event proved such a success,” commented Tina Houlihan, Chief Executive at RP Fighting Blindness. “Enabling peer-to-peer support is a hugely important part of our work; by facilitating this event, we’ve allowed families, some of whom may have felt isolated, to socialise with and learn from one another. It’s thanks to the support of our generous sponsors including Spark Therapeutics and sight loss charity VICTA, and the help of so many volunteers like the MK Dons, that we were able to hold this event. Our most sincere thanks must go to everyone who contributed.”

An important part of the weekend was to gain feedback and information from families affected by progressive inherited sight loss, and to help shape the future direction of the charity’s support services. The charity intends to grow its support and services remit over the coming years, with the recent Families Conference being the first step in the journey.

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